Pitt Hopkins syndrome community on RareConnect.org

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This presentation was given on July 28th during the Pitt Hopkins UK support group meeting in Manchester, UK.

Join the Pitt Hopkins syndrome community here:
https://www.rareconnect.org/en/community/pitt-hopkins-syndrome/understand

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Pitt Hopkins syndrome community on RareConnect.org

  1. 1. 1 Pitt Hopkins community on RareConnect.org Rob Pleticha, EURORDIS RareConnect Community Manager
  2. 2. 2 Patient-led Social Network for Rare Diseases. www.rareconnect.org
  3. 3. 3 RareConnect in numbers 60 disease-specific communities across 5 languages 70.000 monthly unique visitors from 170 countries 2500 member visits/month (each member spends 12 minutes/per visit on avg) Over 1 million words human translated to date
  4. 4. 4 What’s unique about RareConnect?
  5. 5. 5 5 1. WORKING TOGETHER
  6. 6. 6 Involvement of 400 Patient Groups from 40 countries • NOMID Alliance • AMWS/CINCA • VHL Family Alliance International • German Assoc. for VHL Families • Danish Assoc. for VHL • Alianza española de familias de VHL • VHL France • A Magyar VHL Társaság • Dutch VHL Organization • Canadian CAPS Network • VHL Contact Group U.K. • AIFP • Stichting FMF-Community Nederland • AFFMF • FMF Montreal • AKU Society UK • Alcaptonurie France • findAKUre • Foundation for Children with Atypical HUS • AIRG • Argenina VHL Assoc. • SIMBA Italy • Ass. Française de Behçet • As. Española de Behçet • DebRA International • DebRA Belgium • DebRA Croatia • DebRA UK • DebRA Austria • EB-Haus Austria • UK Behçet’s Syndrome Society • DEBRA España • DebRA Canada • Fundación DEBRA México • AHC Assoc. Iceland • A.I.S.EA • AESHA • AHC Foundation • L’aim AKU • DebRA Norway • DebRA Italy • Cystinosis Support Australia • Cystinosis Foun. France • Cystinosis Support Germany • Cystinosis Foun. Ireland • Mexican Cystinosis Association • Cystinosis Group Netherlands • Cystinosis Foun. UK • Cystinosis Foun. USA • Cystinosis Research Network • South Africa Support Group • Cystinosis Research Foundation • Danish HSP Assoc. • A.SL-HSP France • Spanish HSP Assoc. • Italian Assoc. for Living with SP • Holland Asoc. of Neuromusc. Disease • Spastic Paraplegia Foundation
  7. 7. 9 2.BREAKING BORDERS
  8. 8. 10 Machine and Human Translation. www.rareconnect.org
  9. 9. 11 3.QUALITY
  10. 10. 12 RareConnect – Moderators Workshop, Paris
  11. 11. 13 Over 200 moderators from +20 countries Tools: 1. Online Community Charter/Guidelines 2. Moderator Training Guide (How to be a good moderator) 3. Day to day support via 3 Full time community managers 4. A private Google Group for peer support 5. Monthly webinars 6. A Blog to share best practises moderators.rareconnect.org 7. Face to face workshops
  12. 12. 14 Rob Pleticha - Online Communities Manager - Aged 28, Education in Psychology (Uni. Of Illinois) - Previous experience: 2 Years at Romanian RD Alliance Marta Campabadal - Online Communities Manager - 24 years old, from Spain - Social Media Coordination - Spanish Outreach - Education in Marketing & Community Management
  13. 13. 15 Est. 2011
  14. 14. 16 •47 members •4 patient groups •9 articles •9 testimonials •23 forum topics Pitt Hopkins community on RareConnect.org
  15. 15. 17 Updates from around the world
  16. 16. 18 International stories translated by humans
  17. 17. 19 Members looking to connect
  18. 18. 20 Traffic Who has visited the PTHS Community over the last 3 months? 1,099 unique visitors What do they do when they visit? These visitors visit 3.40 pages on average
  19. 19. 21 Countries with most visitors 1. United States 391 2. Germany 136 3. France 128 4. Italy 78 5. United Kingdom 77 6. Canada 65 7. Spain 54 8. Australia 20 9. Belgium 14 10. Mexico 12
  20. 20. 22 How are people finding the community on search engines? 1. pitt hopkins syndrome life expectancy 2. pitt hopkins syndrome 3. pitt hopkins syndrom 4. pitt hopkins 5. pitt hopkins life expectancy 6. sindrome pitt hopkin 7. pitt hopkins syndrom erkrankung 8. pitt hopkins syndrome symptoms
  21. 21. 23
  22. 22. 24
  23. 23. 25 -Strengthen communication across groups by posting updates on RareConnect -Share PTHS community link in your groups -Share community on social media -Active participation -More moderators to respond to questions -Engagement, interest, resources allocated to the community What’s needed?
  24. 24. 26 www.facebook.com/rareconnect team@rareconnect.org +34 663 092 790 @rareconnect www.youtube.com/user/eurordis Thanks, write me: Robert.pleticha@eurordis.org Here we are: www https://www.rareconnect.org/ en/community/pitt-hopkins- syndrome

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